tbuckley/cabot-search huggingface dataset:
Increasing research to address cancer care disparities in an NCI-sponsored community oncology network.
Authors: Manami Bhattacharya, Ann M. Geiger, Kathleen M. Castro, Brenda A. Adjei
Journal: Journal of Clinical Oncology (2022)

176 Background: Improving the delivery and outcomes of cancer care should be informed by research that aims to reduce disparities among underserved populations and those underrepresented in clinical studies. The NCI Community Oncology Research Program (NCORP), a community-based clinical trials network, conducts such research. In this analysis, we aimed to identify opportunities to develop a robust program of disparities-relevant cancer care delivery research (CCDR). Methods: We reviewed NCORP CCDR studies approved between August 2014-May 2022. Any study with at least one aim addressing care delivery in NIH-health disparity or underrepresented populations was deemed disparities-relevant. Studies were categorized as: primary if they were focused exclusively on cancer disparities within populations of interest; secondary if they had a disparities-related aim in a broader study; and exploratory if the aim assessed differences by race, ethnicity, income, insurance status, or practice-level characteristics. For each CCDR protocol, study and disparities-related characteristics were abstracted by two reviewers, who resolved any disagreements by discussion. Descriptive statistics are summarized. Results: Of 23 CCDR studies, a majority had at least one disparities-relevant aim: 4 primary, 3 secondary, and 10 exploratory. Studies with primary and secondary aims focused on racial/ethnic minorities, rural residents, older adults, adolescent/young adults and socioeconomically disadvantaged populations. Cancer care delivery gaps addressed by these studies included shared decision making, guideline adherence, case management, healthcare expenditures, and healthcare accessibility. Most studies focused on patients undergoing active treatment and included multilevel interventions. Only one of the disparities-relevant studies was available to non-English speaking patients. Conclusions: The inclusion of disparities-relevant aims in most of the care delivery studies is encouraging. The fact that most studies with a primary or secondary aim included an intervention demonstrates strong interest in generating evidence that will support improved cancer care delivery. Studies also addressed several distinct disparity populations across a range of care delivery gaps. These results represent opportunities for targeted network efforts to increase the disparities research portfolio and may inform strategies to optimize equitable care delivery that meets the needs of diverse cancer patient/survivor populations.
Expansion of an advance care planning initiative in patients with metastatic cancer: Successes and challenges.
Authors: Steven Oppenheim, Robert A. Figlin, Rica R Castroll, Scott A Irwin, Sean Louis Isserman, Andrew David Hallum, Nadejda Zorina
Journal: Journal of Clinical Oncology (2022)

197 Background: Advance Care Planning (ACP) activities including dialogs about care preferences, patient goals, and advance directives are an important component of cancer care. A pilot ACP initiative has been expanded to include additional sites of cancer care within the Cedars-Sinai Cancer Health System. Methods: The pilot study including two cancer care sites (started July 2017) was expanded to include two additional sites. The prior results were presented to 86 oncologists at all four cancer care sites to promote increased ACP activities for patients with metastatic cancer and/or refer those patients to palliative medicine (PM). ACP activities were defined as one of the following within the last year: 1) an advance directive (AD) or physicians order for life sustaining therapy (POLST), 2) an ACP note and/or 3) a PM referral. Patients with metastatic cancer were identified by an EMR M1 designation by the oncologist from July 2021 to March 2022. Oncologists received monthly lists of patients with metastatic disease lacking ACP activities and quarterly scorecards with their ACP completion rate compared to their peers. Results: An average of 1302 unique patients with metastatic cancer were identified each month combined from all four sites. System wide ACP activities were unchanged from a baseline 51% in July 2021 to 53% in March 2022. One site representing, an average of 101 patients/month, increased ACP activities from 16% to 65%. Conclusions: This initiative increased ACP activities since July 2021 for patients with metastatic cancer at one of four sites. The remaining three sites, two of which were part of the pilot from 2017, showed a plateauing of ACP activities despite embedded PM providers, ACP education and monthly feedback to the providers. This may have been from a higher baseline and longer PM presence at those sites. The site showing improvement was given economic incentives to meet Cedars-Sinai priorities for ACP activities and started at a lower baseline, both of which may have contributed to the increase. Further improvement in ACP activities may occur with involvement of clinic reception, nursing and social work along with more broad economic incentive for ACP activities. This increase was primarily from ACP note completion of 53% (PM 18% and AD completion 10%).[Table: see text]
Reimaging metastatic breast cancer care delivery: A patient-partnered qualitative investigation.
Authors: Mya L Roberson, Joshua S Woods, Lesley Glenn, Julia Maues, Deltra James, Sonya A. Reid, Shekinah Nefreteri Cluff Elmore
Journal: Journal of Clinical Oncology (2022)

259 Background: Treatment advances for metastatic breast cancer (MBC) have markedly increased survival over the last several decades. Despite the clinical innovation that has occurred, there remains substantial fragmentation of care and lack of focused attention on MBC survivorship care. This study partnered with Project Life, an MBC-survivor led patient wellness community to assess MBC patient experiences with treatment experiences and social support services. Methods: We conducted, virtual, in-depth semi-structured qualitative interviews among people who were members of the Project Life Wellness community. The interview guide and study materials were developed in collaboration with Project Life leadership. A study flyer was distributed by Project Life to members that included a link to an eligibility survey. Participants were eligible if they self-identified as having MBC, were a member of the Project Life community, and could complete the interview in English. As part of the interview, we asked, “How would you re-imagine medical care for people with metastatic breast cancer?” We then systematically processed responses with phronetic iterative analysis, using the mixed-methods research software MAXQDA, to uncover contextually grounded, emergent themes through synthetic coding. Results: We interviewed 36 women with MBC who were members of the Project Life Wellness Community in Spring 2022. In terms of age, 8 (22%) participants were 30-45, 15 (42%) were 46-59, and 13 (36%) were 60+. Overall, 22% of participants identified as people of color (Black, Latina, or Asian). In response to how they would reimagine MBC care delivery, all participants touched upon dimensions of care coordination. Aspects of care coordination that participants specifically raised included 1) Organized referral processes for non-oncology care like mental health services, sexual health care, and palliative care; 2) The need for MBC-specific support services within the care setting; 3)Patient connection to psychosocial aspects of care including social work and patient navigation; 4) Streamlined processes for identifying and enrolling in clinical trials. Conclusions: In our investigation, when asked how they would reimagine MBC care delivery, participants overwhelmingly endorsed the need for more care coordination along several key domains. Responses highlighted the unique needs of care coordination specific to MBC patients. Future care innovations should center patient voices to ensure optimal impact.
Cancer care beyond the clinic: An analysis of participation at The Gathering Place, a stand-alone cancer support community.
Authors: Carley Mitchell, Cheryl Apisdorf, Beth Bennett, Melinda Laine Hsu
Journal: Journal of Clinical Oncology (2022)

214 Background: A wealth of published data exists highlighting the benefits of alternative and supportive therapies when used in combination with traditional medical approaches for individuals diagnosed with cancer. Many physical and emotional symptoms, along with quality of life, can be improved through exercise, artistic expression, mind-body practices and support group participation. While many of these services are offered through healthcare systems or large national foundations, fewer community-run organizations exist. The Gather Place (TGP) uniquely serves the Greater Cleveland area at two stand-alone locations. A wide variety of programs and services are offered, free-of-charge, to those affected by cancer. Since spring of 2020, most services have been provided virtually due to the COVID-19 pandemic. While few studies have evaluated predictors of support group utilization, there is limited data on the demographics of participants at individual support communities. Methods: De-identified, retrospective data was gathered from 04/01/2021 to 03/31/2022. Participant data including age, gender, ethnicity, residential zip code, cancer type, treatment center, date of first attendance, programs attended, and frequency of program attendance were collected and analyzed. Results: 1,494 participants with cancer utilized services at TGP with varying rates of unknown data among each category. Educational opportunities, support groups and one-on-one emotional support sessions were most frequently attended. Female involvement was greater than males (83.9% v. 15.7%), with higher participation among Caucasians compared to African Americans (79.5% v. 16.2%). 67.1% of participants resided in zip codes above the median household income of Cuyahoga County. Participants with breast and gynecologic cancers made up the majority (44.3% &amp; 10.1%), while those with cutaneous, head/neck and hepatobiliary malignancies comprised the smallest distribution (1.6%, 1.7% &amp; 1.8%). Conclusions: TGP is a unique organization unaffiliated with a major healthcare system providing nutrition, fitness, healing arts, education and individual/group support programs. Despite a high incidence of prostate and lung cancer diagnoses in Northeast Ohio, participants with these malignancies were a small percentage of total attendees, differing from the high disease incidence and program participation seen in patients with breast cancer. As information was gathered solely during the COVID-19 pandemic when program delivery shifted to the virtual setting, racial or income disparities reported here may reflect similar disparities seen in tele-health during the pandemic. The gaps in utilization we identified highlight opportunities for targeted areas of improved education and referral.
Tele-chemotherapy and related outcomes to improve rural cancer care.
Authors: Ramya Thota, Megan Mullalley, David Michael Gill, Kimberlee Rowett, Zachary Reese, Derrick S. Haslem
Journal: Journal of Clinical Oncology (2022)

142 Background: We previously reported the safety and feasibility of tele-chemotherapy with remote administration of chemotherapy (chemo) in rural hospitals using experienced chemo nurses with direct supervision from medical oncologist at a tertiary site. Herein we report the detailed overview of types of cancers treated, chemo-regimens administered and associated outcomes within an integrated health system. Methods: We retrospectively analyzed 200 patients who received chemotherapy remotely in 4 rural health hospitals in the state of Utah between 2017- 2022. Data collected included age of administration of chemo, gender, cancer type, insurance, chemotherapy regimen, number of cycles, emergency visits, hospitalizations, and infusion reactions. Results: 200 pts received chemotherapy at 4 rural hospitals including Sevier Valley Hospital, Cassia Regional Hospital, Sanpete Valley Hospital, and Heber Valley Hospital in Utah and Idaho. Median age of administration was 53 yrs (11- 96 yrs). Majority were male (n = 118; 59%). Insurances that covered these services included Medicare, Medicaid, Regence Blue Cross, United Healthcare, Tricare and Select Health. The most common cancer types treated included – Colorectal (n = 31), Breast (n = 24), Lung (n = 15), Lymphoma (n = 21), Multiple Myeloma (n = 11), Melanoma (n = 9), Bladder (n = 7), and other benign conditions (n = 25). 47 unique chemo regimens including 1085 cycles were administered. Chemo regimens and cycles detailed below. Among 69 pts with outcomes data available, ED visits noted in 33% (n = 23), hospitalization rate was 17% (n = 12) and infusion reaction rate was 7% (n = 5). Total mileage saved by pts receiving chemotherapy closer to home was 47,955 miles. Conclusions: Tele-chemotherapy is safe, feasible and provides improved access to cancer care in rural areas. Future design of pragmatic clinical trials where remote administration of standard of care treatments closer to home will allow the rural pts access cutting edge clinical trials closer to home.[Table: see text]
ReUnidos: Farmworker Skin Cancer Health Navigation Program.
Authors: David James Savage, Lisa A. Tushla, Katie Guenin, Isabel Gross, Nina Kanakarajavelu, Rebecca Young, Deysi Merino-Gonzalez, Nannette Stamm, Susan M. Swetter, Susan Boiko, Mona Z Mofid, Samantha Guild, Sara A Quandt, Thomas Arcury
Journal: Journal of Clinical Oncology (2022)

113 Background: Farmworkers are at increased risk for skin cancer because of occupational exposure to sun and pesticides. In 2017/2018, Farmworker Justice conducted the Unidos community mobilization project to raise skin-cancer awareness and promote skin-cancer care access in farmworker communities. Unmet needs were identified in follow-up care coordination for patients who screened positive for a suspicious skin lesion. We undertook this ReUnidos study to document the incidence of skin cancer in the farmworker community and to evaluate the benefits of a health-navigator program to facilitate follow-up care. Methods: Participants (primarily Latinx) are screened in the community setting by volunteer dermatologists. Those who screen positive for suspected skin cancer are invited to participate in the study. They are assigned a trained navigator who addresses the importance of evaluating the lesion, the details of the diagnostic process, and any questions the subjects have. The navigators also help arrange travel, scheduling of appointments, interpretation services, and any other supports needed during the care journey. Data are collected on the number of biopsies performed, diagnoses, time from screening to diagnosis, skin cancer staging, time to treatment, as well as satisfaction with and perceived effectiveness of the navigator program. Outcome measures are extracted from chart review and final semi-structured interviews of both subjects and navigators. The project seeks to screen 1,000 community members. Approximately 2% are expected to screen positive for a suspicious lesion and require follow-up care. Results: To date, 16 health navigators have been trained and 6 screening events have been conducted in Northern San Diego County by Vista Community Clinic. A total of 126 adult participants have been screened, with 47% identifying as farmworkers. One participant screened positive for a potential skin cancer and has consented to the study. Conclusions: Community-based screenings linked to health-navigation programs may be effective tools to increase access to skin-cancer care among farmworkers. A telemedicine screening model is also being investigated for a second site in upstate New York to expand rural skin screening access. This model may also be useful in care coordination for other malignancies in farmworker communities such as lung cancer and lymphoma, which have also been linked to occupational pesticide exposure.[Table: see text]
Trajectory of symptoms reported in remote symptom monitoring over the course of oncology treatment for gynecologic cancers.
Authors: Chelsea L. McGowen, Nicole E. Caston, Sheila K. McElhany, Bryanna E. Diaz, Carrie C. McNair, Jeffrey Franks, Courtney J. Andrews, Chao-Hui Huang, James Nicholas Dionne-Odom, Bryan J Weiner, Bradford E. Jackson, Ethan Basch, Angela M. Stover, Doris Howell, Gabrielle Betty Rocque, Jennifer Young Pierce
Journal: Journal of Clinical Oncology (2022)

270 Background: Patients now have the ability to utilize electronic patient reported outcomes (ePROs) for remote symptom monitoring (RSM). This analysis seeks to better understand trajectory of reported symptoms during treatment for patients with gynecologic cancer participating in RSM. Methods: We approached patients with gynecological cancer initiating treatment at the Mitchell Cancer Institute (MCI) between 7/1/21-4/30/2022. Patients were eligible if they were starting chemotherapy, targeted therapy, or immunotherapy for a new cancer. Patients seeking a second opinion were excluded. Enrolled patients received symptom survey (PRO-CTCAE questions) via text or email once per week. Initially, only severe alerts were forwarded to the clinical care team; moderate alerts were forwarded to clinical teams once they were comfortable with alert management. Patients completed symptom assessments for 24 weeks or until withdrawal. Patient age at enrollment, race, sex, cancer type, cancer stage, and PROs were abstracted from electronic health records and the PRO platform (Carevive). Descriptive statistics were calculated using frequencies and percentages for categorical variables and median and interquartile ranges (IQR) for continuous variables. Results: A total of 60 female patients with gynecological cancer were enrolled; 33% were Black or African American and 67% were White; median age was 61 years (IQR 53-68). Seventy-eight percent (47/60) of patients reported 379 symptoms with at least one moderate or severe alert during this time period; 32% considered moderate and 68% considered severe. Overall, the most frequently reported symptom was pain (29%). At baseline (week 0), 14% and 41% of 56 patients reported moderate symptoms and severe symptoms, respectively. Symptom burden decreased over time with 4% and 7% of 27 patients who completed a survey at 12 weeks reporting moderate and severe symptoms. Specific symptom trajectories followed similar patterns. Conclusions: In our sample, patients reported the majority of symptoms during the first three months of treatment. Symptom trajectory decreased with time, suggesting symptoms are being effectively monitored and addressed by the clinical teams engaging in RSM. Future research is needed to understand if symptom improvement translates to increased quality of life, decreased hospitalizations, and increased survival for patients, as well as lessen the burden of call volume on the clinical team.
Development of a patient-reported outcome measure (PROM) screening strategy for early palliative care needs in outpatients with advanced cancer.
Authors: Tara L. Kaufmann, Gabrielle Betty Rocque, Elizabeth Ann Kvale, Arif Kamal, Michael Pignone, Antonia Vickery Bennett, John Saxton, Rabecca-Kimberly Hernandez, Angela M. Stover
Journal: Journal of Clinical Oncology (2022)

203 Background: There is a critical need to develop standardized and feasible methods to monitor patients for unmet palliative needs and direct timely referral to specialty palliative care. We developed a patient reported outcome measure (PROM) measurement strategy to screen patients for multidimensional palliative care needs. Methods: Guided by evidence-based frameworks for early palliative care in oncology, we identified 8 key domains for PROM monitoring that are meaningful and actionable in clinical care and appropriate for direct patient report. We conducted a systematic search for PROMs assessing these key domains using the Palliative Care Research Cooperative (PCRC) Measurement Core resources and the Grid-Enabled Measures Database. PROMs for each domain were compared for content coverage, psychometric properties, proprietary availability, Spanish translation, and attributes (response options, length, literacy demand). Results: We selected 13 PRO items for weekly monitoring (Symptom PROs) and 11 PRO items for monthly monitoring (Palliative PROs) (Table). We did not identify any validated PROMs to assess caregiver burden from the patient perspective. Validated PROMs in short formats for spiritual/existential needs are limited. Conclusions: Existing PROMs are limited in capturing the multi-dimensionality of palliative care needs for patients with cancer, particularly for spiritual needs and patient-reported caregiver burden. Future work will focus on piloting identified PROMs to monitor patients for early palliative care needs and determining thresholds to trigger referrals to specialty palliative care.[Table: see text]
Severe symptom reporting in surgical patients assessed through an EHR-integrated ePRO questionnaire at 6 cancer centers.
Authors: Sandra L. Wong, Hannah W. Hazard-Jenkins, Deborah Schrag, Raymond U. Osarogiagbon, Don S. Dizon, Jessica J Bian, Christine Cronin, Angela Tramontano, Michael J. Hassett
Journal: Journal of Clinical Oncology (2022)

243 Background: Patients (pts) undergoing surgery for suspected malignancy may experience burdensome post-operative symptoms which can compromise outcomes and necessitate acute care. In prior randomized controlled trials at academic medical centers, patient-reported outcome (PRO)-based symptom management solutions improved clinical outcomes. Attempts to generalize this approach to real-world surgical pts have been challenged by perceptions that severe symptoms rarely occur, responding to severe symptoms can be burdensome, and uncertainty about which symptoms are likely to be severe and need interventions. Methods: Six US-based healthcare systems deployed eSyM, an EHR-integrated symptom management program. Pts undergoing surgery for suspected or confirmed thoracic (THOR), gastrointestinal (GI), and gynecologic (GYN) malignancies received automated questionnaires via MyChart portal 1-3 times weekly for up to 3 months after discharge. Questionnaires based on the PRO-CTCAE included 10 required and 20 optional symptoms, all scored as 0 (no symptoms), 1 (mild), 2 (moderate), or 3 (severe). Additional questions assessed functional status, overall wellbeing, wound discharge, and wound redness. Frequency and predictors of severe reporting were assessed using descriptive statistics and logistic regression modeling. Results: 21,012 surgical eSyM questionnaires were submitted between October 2019 - March 2022 by 3,781 unique pts (median age 63 years, 66.9% female, 92.1% white, 57.9% married, and 37.5% retired). 17% of questionnaires (16% of GI, 14% of GYN, and 21% of THOR) included at least 1 severe symptom. Frequencies of severe symptom reporting appear in Table with physical function impairment, general pain, and fatigue as the top three. Severe symptoms were more likely to be reported by younger, female, or unemployed pts(p &lt; 0.01). In comparison to GI pts, GYN pts reported fewer and THOR pts reported more severe symptoms (p &lt; 0.03). Conclusions: A meaningful minority of pts reported severe symptoms, suggesting that symptom monitoring could benefit pts without over-taxing clinicians. There were few strong patient-level predictors of severe symptoms, arguing that population surveillance may be preferable to targeted surveillance. Interventions are needed to address common severe symptoms and future studies should define most effective mitigation strategies for these symptoms. Clinical trial information: NCT03850912. [Table: see text]